When you hear hoofbeats, think Horses, not Zebras.
This is what Doctors are taught, but Zebras i.e. Rare Diseases do exist and pose many challenges!
what are Rare Cancers ?
Cancers by themselves are rare and within them four common cancers (breast, colorectal, lung and prostrate) account for more than 50% of all cancer cases diagnosed worldwide. National Cancer Institute, USA, defines rare cancers as those that occurs in fewer than 15 out of 100,000 people each year. There are more than 190 types of rare cancers and they account for 22% of all cancers diagnosed worldwide.
challenges ?
The problems one faces after encountering rare cancers are many
- Incorrect or late diagnosis
- It can be hard to find really useful information.
- It can be difficult to find experienced specialists to treat such cancers.
- Very little options available to take therapeutic decisions.
- Therapeutic options are largely empiric.
- You may not know anyone else with such cancer to leverage their experiences
- Rare cancers get less scientific consideration and financial support.
- No or limited clinical trials data.
- The average outcome for patients with a rare cancer is inferior compared to more frequently occurring cancers
Our objectives
- Provide comprehensive support to individuals affected by rare cancers, including patients, families, and healthcare practitioners, through education, advocacy and emotional support.
- Create a world where individuals with rare cancers are empowered, informed and supported, ensuring they receive timely diagnosis, effective treatment and compassionate care.
Key Focus Areas
§ Patient Support
- Create a network of support groups for patients to share experiences and receive emotional support.
- Provide guidance aid for treatment and medications through the support network
- Offer guidance on rare cancer treatment options and clinical trials.
§ Family Support
- Offer counselling and psychological services to help families cope with emotional and financial stress.
- Establish a helpline or support-group and portal for questions related to rare cancers, treatments and logistical assistance.
§ Practitioner Support
- Provide educational resources to healthcare professionals about rare cancers, emerging therapies, and best practices for diagnosis and care.
- Host workshops and conferences to update practitioners on the latest in rare cancer research and treatment.
§ Advocacy and Awareness
- Launch local and national campaigns to raise awareness about rare cancers and the challenges they present.
- Advocate for policies that ensure better access to diagnosis, treatment and research funding for rare cancers.
Programs and Services
§ Educational Materials
- Develop easy-to-understand, patient-friendly educational materials on rare cancers, treatment options and coping mechanisms.
- Create resources for healthcare professionals to stay updated on the latest advancements in rare cancer treatment.
§ Clinical Trial Directory
- Curate a comprehensive database of clinical trials available for patients with rare cancers.
- Collaborate with hospitals and research institutions to ensure patients are aware of relevant trials.
§ Telemedicine Services
- Set up telemedicine platforms for patients to consult with specialists who are knowledgeable about rare cancers.
- Offer virtual support groups and counselling sessions for families.
Partnerships and Collaborations
§ Healthcare Institutions
- Partner with hospitals, clinics, and cancer research centers to facilitate better care and treatment access.
§ Pharmaceutical Companies
- Work with pharmaceutical companies to promote research and access to drugs specifically targeting rare cancers.
§ Government Agencies
- Advocate for increased funding and awareness for rare cancer research and support services.
§ Other NGOs
- Collaborate with other healthcare-focused NGOs for shared resources, support and advocacy.
§ Academic Institutions
- Partner with universities and research centers to foster innovation in rare cancer research and treatments.
Communication and Outreach
§ Online Platform
- Develop a user-friendly website with resources for patients, families and healthcare professionals. Include forums, blogs, and patient stories.
- Create a mobile app for easy access to resources, treatment directories, and support services.
§ Social Media
- Utilize social media channels (Facebook, Instagram, Twitter) to raise awareness about rare cancers, share patient stories, and provide educational content.
§ Public Relations
- Work with media outlets to create public awareness campaigns about the impact of rare cancers and the need for support.
Sustainability and Fundraising
§ Fundraising Events
- Organize charity events such as galas, virtual runs and auctions to raise funds for the NGO’s programs.
§ Donor Program
- Set up a donor program for individuals, businesses, and foundations to contribute to the NGO’s mission.
§ Grant Applications
- Apply for grants from governmental and private organizations dedicated to health and cancer research.
Monitoring and Evaluation
§ Impact Assessment
- Track the number of patients and families helped, the amount of financial aid distributed, and the number of healthcare professionals trained.
§ Feedback Mechanism
- Collect feedback from patients, families, and practitioners to continuously improve services.
§ Annual Reports
- Publish an annual report detailing achievements, challenges, and plans for future development.